Wednesday, November 12, 2008

18 Months & NATT

Sorry for the 2 month delay in posting, but I figured that now I have reached a major milestone, 18 months since my BMT, I should update this blog. I had my milestone checkup with my Dr yesterday, but no great changes. Last month, I reduced my prednisone medication to 5 mg every other day and today reduced again to 2.5 mg. I have been having more joint pain which may be a result. When I cut out the prednisone completely in March, I could hardly walk, so will be watching what happens now.

I am still having phlebotomies every two weeks to reduce my iron levels. An MRI of my liver last month showed that my liver is loaded with iron. My blood ferritin level was also 4074, where 150-300 is normal. It will take another 3 years at this rate to reduce my iron levels to normal. A Google search on iron overload shows that it causes fatigue and joint pain as well. This somewhat explains why I have been taking so many naps and my joint pain as well. Hopefully, the other complications of iron overload don't occur.

Last month, I also dropped the protonix and fluconozole medications, but after my complaints of heartburn to the Dr yesterday, I am back on the protonix at half the dose. I also tried to reduce the Viokase, but learned I still need it. It replaces the enzymes that my Pancreas is not producing. I actually need to take higher levels since I had more oily diarrhea in the past month.

During October, I attended a local conference call "Stop the Clot" sponsored by the National Alliance for Thrombosis & Thrombophilia (NATT). I also attended a local support group last week. You may remember that 4 years ago, I was hospitalized for the first time with pulmonary embolism (PE), three blot clots in my lungs. I had a couple more episodes in 2005. I was very fortunate since 25% of PE results in sudden death. I heartily recommend that you check out this web site and learn to recognize the symptoms.

Overall, I am very fortunate to have made it this far and have relatively minor problems. God has been watching over me and must have some purpose still in store for me, maybe just as an example for all of you.